Clinical trials: the viewpoint of children with a chronic illness compared with healthy children

Abstract

The views of over 200 children (11-16 years old, who were either healthy or attending paediatric medical clinics with a chronic illness) on issues relating to paediatric clinical trials were determined by a questionnaire. Children with a chronic illness had a better understanding of the concept of dosing of medicines (40% vs 23%) and placebo (34% vs 20%). They were more likely to support children's involvement in clinical trials (51% vs 37%). The altruistic nature of children in both groups was similar. It was of concern, however, that 57-63% children would participate as healthy volunteers in a cancer drug trial. Both groups were able to differentiate between the different types of illnesses where it is appropriate to study medicines in children (86-89% for illness where there is no treatment; 34-40% for 'me-too' drugs). Young people should be given more opportunities to be involved in decision-making regarding clinical trials of medicines.

“We Know What We Are Talking about”: Experiences of Young People with a Chronic Condition Involved in a Participatory Youth Panel and Their Perceived Impact

“…The results imply a youth panel is a suitable way to facilitate participation of young people with chronic conditions in multiple research and implementation projects and activities over a longer period of time. The finding that panel members were enthusiastic about their role in the youth panel supports previous work reporting that young people with chronic conditions are generally able and willing to participate (Cherrill et al, 2010;Lightfoot & Sloper, 2003). However, panel members in this study were also ambitious to continue and expand their influence, suggesting that they value the structural participation in a youth panel.…”

Tomando decisões na atenção à saúde de crianças/adolescentes com condições crônicas complexas: uma revisão da literatura

“…With regard to the large number of studies that consider DM a component of the Family-Centered Care philosophy (FCC) 12,27,28,[31][32][33][34][35][36][37][38][39][47][48][49][50][51][52][53][54][55][56] , we problematize which borders, between constructing alliances for the care that promote supports, health, exchanges of virtuous care goods 17 , between kin and professionals, valuing the logic of care 16 and the dangerous tendency to hold the family accountable -albeit unintentionally -for care, for example by increasing gender inequities and therapeutic "pilgrimages" 19 .…”

“…Other aspects that emerge are: parent empowerment 31,50,55 ; DM over children and adolescents whether or not they participate in clinical trials 54,56 ; evaluation of DM as an indicator of the quality of health services from the perspective of parents 53 . In FCC, communication processeswhich as an ideal type should enable an action constituted both by transmission of information from the health professional, and by their hearing out the person with chronic illness, valuing their culture, experience and social reality -are one of the key principles 25 .…”

“…The increase in the symbolic/cultural capital of the parents can be seen as a solution to improve the practices of doctors and nurses in communication and decision making, improving the practice of FCC. 62 Finally, there is the understanding of TD as a result of sharing not only between the actors involved, but of other sharings 27,28,[40][41][42]56,57 , where environment, senses and experiences also influence decisions. The disease, embodied in a subject, comes loaded with a series of meanings, which integrate the meanings on the side of the patient, which does not summarize the illness only in physical suffering, incapacity, disability, but the possibility of not being worthy anymore of love and respect.…”

“…From the analysis of thematic content, we identified four main themes related to DM: DM as a process 12,[26][27][28]30,[32][33][34][35][36][37][38][40][41][42][43][44] ; DM as an aspect within the health planning nent of FCC 12,27,28,[31][32][33][34][35][36][37][38][39][47][48][49][50][51][52][53][54][55][56] ;DM as a result from other sharings 27,28,[40][41][42]56,57 .…”